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Good afternoon Ladies!
I am here after many dr. appts and now I will have a new oncologist who will be a better fit than the 1st one. As I have said I saw her in July at the start of my treatments and never again. If any questions I had, I called the chemo nurse. Not really a care team. Now I think that I am on the right track. I will have 4 more treatments with Taxotere, once every three weeks and it is supposed to be easier. We shall see. So this will take me to January if all goes according to plan. I see a plastic surgeon next month to see what he can do for or with me. The surgeon said that the lumpectomy would take a large wedge shape of my breast. I liken it to be about a quarter of my breast. Then I would be lopsided for sure. Sadiej I think that you had a lumpectomy if I remember correctly. Anything you can share about that with me? How are your radiation treatments going? You must be done by now. How is your pain level?
Claoh, in response to your statement" Doctor said this was "just what cancer does" I get it all the time, but it is "Chemo side effects" So I hear you on that one. I had a pt. who had a similar condition that you are describing and unfortunately your doctor is right. It just continues to grow and break the skin. I am sorry to hear this. I missed my support group this week as I was at the new oncologist's office, so nothing to share about that. I think that the days seem to be long. There is not much going on, I have fatigue so going out for more than a few hours is hard. Maybe the market, or drs. office. I did get a temporary handicapped placard which means a shorter walk than before in parking lots. Well, that just about wraps it up for me now. Glad to see you guys online! Don't even have a joke!
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Morning
Below is an excellent manual for breast cancer
Treatment for breast cancer:
Lumpectomies:
Skin:
Life Expectancy
Hope this helps everyone.
Hugs
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Sadiej, very nice articles that I found to be very helpful. I will have a lumpectomy sometime time Feb or March and am going to see the plastic surgeon in November so this is good information for me to have!
Today I feel really good, it has been quite some time since I felt this good. Lots of sleep helped I guess. Friday, Nov 3rd is my next chemo. It will start the next 4 cycles with Taxotere. They said it is not as harsh as the A/C. I am so hopeful. I changed oncologist and feel good about that. Right now nothing much is new to talk about. This Wednesday is my support group so maybe something will come up! Talk care my friends and yes I DO worry about you both!
marla
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Good morning everyone. Had my appointment with the radiologist yesterday and not sure what I'll do. He feels it could very well leave me with an open wound not unlike what I'll have if not addressed. Also some concern for my lungs and heart. It would consist of 15 rounds of radiation. Once a day every weekday for three weeks. He is going to reach out to my original surgeon to reexamine the possibility of mastectomy. I'd be surprised it that was an option as she didn't want to do that six months ago. I'm also concerned how my high blood pressure would respond to a major operation like that.
When my hospice nurse comes this week I'll be peppering her with many questions about open wound care and how exactly that would be addressed when it happens, which it will if left on present course.
Sadie, I too appreciate the articles you offered and have printed out the one about ulcerating cancer wounds.
Marla, can you give me more insight on your patient who had open wound. Best treatment. Don't suspect it was every completely resolved. Right now I would like some kind of relief from the rubbing on fabric.
Along those lines, I am thinking of telling a few more people of my condition as it's getting harder to pick out tops that sort of "conceal" my enlarging lump. The first would be my 91 year old friend that I keep saying I don't want her to hear it from anyone else. I think that will be tough and I'll have to have plenty of time to stay with her and let her process.
Hope all is well with you. Wonder if our more frequent absence is a sign of each of us moving into deeper concerns with our cancers. Look forward to hearing from you.
Love and prayers, Cindy
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Morning ladies and gents
Claoh I have not seen you on the boards. Are you all right?
Marla, I am so glad to see you up and around and enjoying your life as much as possible! I enjoy reading your posts. I am also glad that you got a new oncologist. That just wasn't right to leave you just calling a nurse that whole time. Like I said I see mine usually once a month and very rarely the head nurse instead of my oncologist. Our talks and conversations get into the deeper questions, not just chemo related questions. I appreciate my oncologist's honesty about my cancer. No one should be left in the dark concerning stuff like that. Like I said I'm very grateful that you found someone new to walk with you through this.
So my routine is basically been sleep, sleep and more sleep. Between the two weeks of radiation, my fractured coccyx, and chemo last Monday the only thing I have been looking at is the backs of my eyelids lol. I have chemo next Monday along with a couple more MRIs next week. I also have an appointment with my neurologist which is a really good thing because something really weird is going on with my nerves and it could possibly be because of my fractured coccyx but then I'm not a doctor.
On a good note, my husband and I are looking for a place near where my daughter works in Georgia. My oncologist has already agreed to do distance treatment for me which I am very grateful for. I still need to have this conversation with my palliative care doctor. I'm not sure how all that would work and if he could also guide my requirements from a distance. It will be so good for me to be close to her. She is really busy right now having just opened up a coffee shop but there's always time for hugs. :-)
We had our first snow yesterday. It was only about an inch and it didn't last long. I have a feeling that this winter is going to be a little more rough than it was last year. We have someone that clears the snow for us . We got the wood for our fireplace last spring so it's sitting in one of the garage stalls all stacked up and ready to go. I think it would be nice if we found a place down south and didn't need to use the fireplace LOL. But at least we have it if we need it. We also haven't decided whether we would rent this house or sell it. It's a tough question when you realize that you're dealing with stage four cancer. The chances of seeing this house again once I move south are pretty slim.
Okay ladies and gents. I just wanted to get on this board long enough to let you know that I am still alive lol. Claoh let us know how you're doing and Marla it's okay if you don't have any jokes. :-)
Y'all be blessed.
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Hey Sadie, we were typing at the same time yesterday : ) Check out my conversation above yours : )
That is a big decision to move South, but I do think you will be blessed to be by your daughter. Concerning the house, will you move South as soon as possible, and then decide whether to rent or sale, or is that a factor into when you'll make the move?
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A friend of mine wrote this on her Facebook page:
Someone who had terminal cancer once said, "don't be sad for me, we all come to this world to be a tourist, enjoy life, sightseeing, do good deeds and I just so happen to leave earlier than others". Today is Cancer Survivor Day. Can I ask a favor?? Just a few of you will do it, If you know someone who fought a battle against cancer and passed away, or someone who is still struggling, or know a brave survivor !! Copy and paste or share this to your status to show support, respect and love. 💔
#CANCERSUCKS
What a different paradigm to consider yourself a tourist, to enjoy life by sightseeing and doing good deeds for each other. Another friend of mine rang the bell today as she was done with her chemo. I told her that the world was hers. We are tourists, and what we view and how we view it can make all the difference in the world. I just want to take the time to thank my friends on this blog and to encourage you to live the life that you have in this moment.
Love y'all. God bless 🙏
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Morning ladies and gents
Claoh we are planning on putting the house up for sale this coming week. We may not have all the answers as far as what we're going to do with where we're living or getting my chemo but sometimes you have to be brave (or foolish) enough to experience the blessings that you would have missed if you hadn't taken the steps in the first place. Or I suppose you could add craziness to the above adjectives. But then having stage 4 metastatic breast cancer with no cure does tend to make one brave. So yes, we are putting this house up for sale this coming week, packing the stuff we want to take with us and selling off everything else. It reminds me of a poem I wrote a long time ago about dropping off the junk in our lives along the side of the road and taking along only the better part of yourself. And I've told my husband many times that if we were going to do something crazy like this we may as well go to the top of the mountain instead of only halfway up. Might as well go for broke if we fall LOL.
Sunny I'm grateful for your comment! Thank you for your prayers. Surely we all need them and I too like to reciprocate that back to you and everyone else on this board. I am also glad to hear that you are not going to let recurrence hang like a cloud in your life. Sometime perhaps you can expound on your experience. I believe that you probably have quite a path that you've been on and I would love to hear your story. But this is only a request from me. This is not something that you need to do just because I asked. I think all of our stories are quite amazing actually. Marla for instance is very strong and a wonderful encourager. Claoh is the gentle spirit that keeps me straight when I tend to go sideways on my path. Me? Haha I do believe that I am the "bull in the china shop" LOL. But each of us have gifts that we give to each other that help us along the way. Although Marla, I do miss your jokes!
So I've got chemo on Monday along with another visit with my oncologist. I will be getting MRIs again this coming Wednesday. My lymph has taken over pretty much everywhere in my body except my left arm. It's kind of funny seeing really fat fingers on one hand and really skinny fingers on the other. Swallowing is getting hurt too. I know that on my last PET scan they saw something and wanted the gastro to check it out but between the radiation and my broken tailbone I just haven't had time to get with him. I'm planning on setting up an appointment with him when I call him next week.
I've been thinking a lot about remission and maintenance. Remission means it's gone away go live your life and maintenance means it hasn't gone away go live your life. That's as simple as I can put it. When I went into remission when I had cancer in 2013 I didn't have to continuously be checked and given chemo and radiation and gamma knife surgery. The strange thing is that this is not a recurrence of my old one. So for me I have had no recurrence but just two different types of cancer which is pretty rare for it to happen like that. Because I am on maintenance I will continually get the chemo / radiation / gamma knife surgery for the rest of my life. And I have so many pills I have to take I look like i have my own pharmacy. All to keep me going, all to keep me alive. Doesn't it make you wonder sometimes if some people that died of cancer during maintenance actually died because they were just plain tired? I'm not planning on dying anytime soon everybody but it does make you wonder if all this stuff doesn't just wear you down to that point.
But I do babel on don't I? My point to looking at maintenance is to see where I am in the big picture. There are different types of maintenance and I have found out I don't really line up 100% to any of them. :) So my maintenance consists of continuing to give me chemo so that the breast cancer itself doesn't spread as well as various other treatments for where it would pop up like it did in my brain and bones. I don't know if that treatment took care of the metastases once and for all or whether there may be more to come. Then again I wonder if the lymph in my legs isn't a forbearer of issues in my bones elsewhere. I don't know those answers. The good news is that this blog should help somebody else down the road as I find out the answers for myself.
On another good note, I received my lymphedema vest this weekend and now I'm just waiting for the technician to give me a call so we can set it up for me. I'm seriously considering the leggings also to help with swelling there. I know I can't keep up with it and these should really help me.
Haha, have I talked long enough? At least it gives me a chance to get my thoughts and feelings out for others to see and to get inputs. Y'all are the best! Hugs!
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Almost two weeks with no word from Marla : ( Prayers and concerns. Wish her husband would send a note. Don't know if she ever set that up, asking him to keep us posted.
Not a lot of news on this end. As suspected, the original surgeon did not care to do mastectomy. Have asked my hospice nurse to see if any surgeon under their umbrella would give second opinion on such an operation. Guess I am not leaning towards the radiation as I haven't reached out back to the radiologist.
Take care everyone and look forward to next updates. Our board has gone quite silent and I miss the banter.
Love ya........
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Marla are you there? We miss you and hope everything is okay.
I am worn out but I still really appreciate the levity that is brought to this board. Such a good way of getting our minds off of this and smiling for a change. Not that I'm good for any jokes so I guess I'm going to have to depend on you gals for a laugh.
It has been an incredibly rough week for me. My whole day today is structured around sleeping. I cannot believe what's happened in one week! I am really exhausted. Regardless I too really want to hear from Marla and see how things are going for her. I can understand needing a break from the boards for a few days but I get concerned about ya when it's longer than that. We love you Marla and we really want to see you back.
So for the sake of the board, I need to let everyone know what has happened to me at this point in time. Isn't it funny how you come into the board and you're laughing and talking and then the symptoms start to get worse and it gets more and more serious? But I'm getting sidetracked again lol.
Monday I was admitted to the hospital and had to spend 4 days there. It turns out I had a very bad UTI that was causing me to bleed when I went to the bathroom as well as spotting my diapers. So as I said I was in the hospital where they kept pumping fluids and antibiotics into me until they thought I was far enough along to allow me to go home. During that time, on the first day they did a series of MRIS that went from the top of my head down to my toes. It's weird when you think about the fact that they have an entire picture of you from the inside lol. I really don't remember much of it. I was extremely out of it when they admitted me and was more concerned about the tip of my hospital gown touching the toilet water. Donnie said that was pretty much all I could talk about until they got me a new hospital gown. Talk about obsessing! Anyway I'm pretty sure I counted about five doctors that were working on me while I was in there. They got the bleeding slowed down and possibly stopped. It's been too short of a time since I was discharged so we are just waiting to see if it is settled down after all the stuff they pumped into me while I was in there.
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Yes, I agree that the atmosphere of our posts have really changed. Hope you are on the mend Sadie. Not any news here as I was not seen by my hospice nurse this week. Really expected to have her call to come by both Thursday and Friday. Will have to call her monday to see what's up. I know they have merged with another hospice group and were having to come once a week rather than every 7 - 10 days. Perhaps that has not been instituted yet, and I just assumed she'd be here this past week, but may still have the 10 day window to work with. We do get frustrated with the time it takes to get answers, but sometimes, there are no answers - just stay on course.
Take care and do hope Marla is able to come on soon.
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Sounds to me like we're all a little unsure of our roads right now. I know for me my concern was in the uterine bleeding followed by the vaginal bleeding that I had going on right now. I even have the cramps to go with it. I was reading through some of the test reports and there's a chance that five or six areas on my back plus one area up in my upper neck plus one area in my brain may turn into metastases. I knew that tnbc is aggressive but I don't think I ever really realized how aggressive, how fast it can be. They are lining up some more tests for me to get a closer look at a couple other areas not related to the bleeding. It kind of shatters my confidence when I felt that I knew what was going on back at the beginning of this board. But like I said we are here to lay out our paths and pass our knowledge on to others who may come behind this God forbid. In the meantime, my best medicine is sleep. And of course watching old western movies lol.
So the house now has a for sale sign in front of it. It shouldn't be long now before we head south. I have been trying to reach my old oncologist but I must admit I'm not putting that much effort into it. All this new spots along my back and neck and brain along with uterine bleeding and vaginal bleeding has been a little hard for me to take in. I really wonder if anyone else with tnbc ever experienced those symptoms. On a good note, at least my hair hasn't fallen out yet!!
The electrical "shorts" that I have been getting up through my feet and into my legs and body are all neurological. At least I'm pretty sure of it. It would make sense since you're dealing with nerve endings right? Plus the swelling in my arms and legs have gone from bad to worse. Yes I got a vest for the upper part of me but not having any way to drain the lymph from my lower legs has made my legs so heavy that I can barely walk.
My husband just sits back and watches me go through all these pains and illnesses and I can tell he is wishing some way that he could make everything go away. I love him so much and hate to see him sitting beside me in his hidden despair. They say the tnbc has a lifetime of 6 months to 22 months and sometimes 3 years. With everything that's going on with me I really hope that he gets the latter and can enjoy just that much more time with me.
I would love to hear what your spouse's think about what you two are going through. It would be really nice if they could tell him that they get it. But that's actually their personal business and I could not ask them to do something that I could not ask my husband to do. This puts so much pressure on him and my heart goes out to him as he strives to present to me a positive front despite everything that's all going on.
Nothing more to say. Love you gals.
Pat
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It has been a long time since I posted, but I have read what you ladies said. As Sadie was in the hospital, so was I. Not feeling well last week due to taking Taxotere, MISERABLE. and they said It would be easier than the A/C, ha, they lied! My fingers hurt and hard to type, so I will keep it short for now. After 9 days of fatigue, diarrhea, and aching all offer, they found I have a DVT in my left leg so on Eliquis, a very costly medication. Just stopped by to check in. But I think that you ladies have the worst of it!
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Marla!!!!!! So glad you're back!!!! Please give you husband your sign on info so he can keep us informed if you're not able to for a couple of weeks. The unknowing is so difficult. I tried to reach out to you with an old phone number I found on a sight where you were a nurse/teacher. Guess you no longer use that number as it was several years old : )
Today my husband tested positive for covid. Don't know what that means for me. I banned him to his bedroom and said he doesn't get free reign of the house for the next 10 days. so far it has given him chills and a head cold.
No news for me from hospice. She did not come last week so do expect her tomorrow or Wednesday to get in her 10 day window. I will say there have been some subtle changes but I don't know what they mean. The burning has moved away from my ulcerated area to over all chest area. My blood pressure has mysteriously gone from being very high to 120/130 and I haven't needed to take the pill to bring it down for a week. Had some serious constipation to deal with last week. Tired more often but keeping plenty of sleep. Noticed I lost 5 lbs this week. First weight loss since the start of this.
Again, so glad to see you Marla. You're both so very important to me.
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Marla so good to hear from you! I'm sorry that you're dealing with all those things. I'd say the road is a little bumpy for all of us including Claoh. I'm wondering if you get any good news or change for the better at least to get a break from all of it. So far I'm not seeing one.
Tomorrow morning I have to go back to the Cleveland Clinic emergency department. Yesterday I fell down a flight of stairs on my back and only stopped when my head slammed into the concrete block wall at the bottom of the stairs. I finished off my antibiotics but I'm still getting blood in my urine so I'm not sure what they're going to try next. Amoxicillin has always worked for me before but this time for some reason just doesn't want to heal it up
My hubby agreed that it would be a good idea for our spouse to jump on when we are not able to. Be blessed!
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I'm ok, but having a couple rough days. Still feel in limbo concerning ulcerated tumor. All my professionals leaning towards radiation, but just not feeling it. As said before, the radiologist wasn't real encouraging and not sure I'm not jumping from the frying pan into the fire. Trade offs just don't seem that positive. Don't know where to start next week in seeking council.
Then today that ulcer is really ramping up the pain and I'm dealing more with that also. The rubber is hitting the road in reality. Was just thinking if I get to the point I want to go to a hospital for help, I would go to the one where my hospice doctor is a part of, one town over, rather than the one in my city. Get her involved from the get go.
Still not regretting my decision and pain control is my ultimate goal.
Did go to my favorite consignment shop this afternoon to get some new patterned tops a size bigger to accommodate my larger breast and ulcer. Then did some grocery shopping. I was pleased to walk out of the consignment shop with six "new" tops : )
Sadie, how are you after you fall down the steps and visit to Cleveland Clinic? Marla, how are your fingers and legs? Seems we all think the others are worse than ourselves. Guess that's a good attitude with fortitude.
Take care.......
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Good morning ladies!
Well I have to report that I have felt okay for the last week. The oncologist wants to change me to Taxol weekly for the next 9 weeks. I feel very anxious about this since the Taxotere made me so sick. The Dr. said should have very few side effects. I hope so. I have just been trying to keep my head above the water line! My husband doesn't partake in this online group or another other. but thanks for asking. I can see why women chose a double mastectomy since the chemo is so rough and not wanting to do it again. I still have not made up my mind, will see the plastic surgeon in Dec for a consult before surgery in February.
Wishing you guys a safe and quiet Thanksgiving.
take care
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